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#23703 07-08-2007 01:45 AM
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MikeT Offline OP
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Hi everyone.

I was Dxed with cancer on the left side of my tongue on 5/22/07 (SCC). A PET scan was negative for any spreading. On 6/13/07 the doctor removed about 25% of my tongue and replaced it with muscle, skin, etc. from my arm.

They also removed the lymph nodes on the left side of my neck. Regretfully, one was positive with a small tumor.

Tomorrow, 7/9/07, I meet with my oncologist for the 1st time. I'm treating at the Barret Center at the University of Cincinnati Hospital. I have several concerns/questions, and would really appreciate any advice.

1) They want to do radiation and chemo. What chemo protocols have the highest sucess rates for SCC?

2) How quickly should we peoceed with radiation/chemo after surgery? My doc sz 3 weeks, but they move so slow, when I was eligible, they set an appointment out several weeks. HOW CAN I GET THEM TO START TREATMENT ASAP??

3) My doc sz I have a better than 2/3 shot at making it through this. I don't know if I can beleive him because that's not what I have read in my books for Stage III cancer.

4) How to stay positive? I feel, much of the time, like a "dead man walking". I know thatmy emotions/attitudes can make a difference in the final outcome, but have difficulty staying positive. Any advice?

5) I have read that alcohol and tobacco play a hand in this disease. I am wondering if the 5 year survival stats are skewed to the low side because many of the patients engage in these addictions even after they are diagnosed. In other words, has any seen/heard of any controlled studies where survivial rates are charted for people who quit smoking/drinking v. those that don't.

Thanks very much for you help.


Stage III Cancer of Left Tongue Diagnosed 5/22/07; resection/reconstructive surgery 6/13/07 with removal of left, cervical lymph nodes (1 positive; Chemo/Radiation to commence shortly.
#23704 07-08-2007 06:04 AM
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Hello Mike

I had surgery 5-17-07. MO surgeon said 3 weeks to start treatment.

RO said maybe 4 wks. (All healed)

No chemo appointment until 6-25-07. Who said I did not need chemo.

First rad. tx 7-5-07. On 6-30-07, I had two bumps appear. I called RO on 7-2-07. They said they would look at them at my first appointment on 7-5-07.

RO looked at the 2 bumps. Said they were new tumors. They boosted radiation dose on the two tumors. Now I am waiting to get chemo asap.

Today I got a new bump and all three are growing swiftly and it is freaking me out!

I AM NOT A DOCTOR. But I would push for rad & chemo at the three weeks.

Do not get caught up in the percentages of survival. It is unneeded worry, no two people react the same and there are two many variables.

Staying positive- Do everything you are told, ask questions and pray. Some recommend meds if needed.

Well, that's about 3 1/2 answers.

Good Luck, Petey


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
#23705 07-08-2007 06:18 AM
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Lots of good questions, Mike. You will, no doubt, get lots of different answers. smile
As to the one about waiting so long for chemo\rad., it's because you have to heal from surgery before they will start the next round.
There is a ton of info on different chemo protocols and many times it boils down to where you are being treated and the preference there. I think learning about the potential side effects of diferent forms of chemo would be important to you.Stop reading statistics- you are an individual-not a number. As to staying positive, some folks just get into the mindset of "I'm gonna beat this thing" and others need some help in the form of anti-anxiety meds, etc. We are all different in that regard. And you are correct, having a good outlook will serve you well during the next months. Good luck, Amy in the Ozarks


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#23706 07-08-2007 09:13 AM
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MikeT Offline OP
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Amy & Petey:

Thank you very much for your replies. I will check out the remainder of this site for chemo protocol issues.

Petey, I am sorry to hear of the new tumors; at least they got picked up early and can be taken care of.


Stage III Cancer of Left Tongue Diagnosed 5/22/07; resection/reconstructive surgery 6/13/07 with removal of left, cervical lymph nodes (1 positive; Chemo/Radiation to commence shortly.
#23707 07-09-2007 02:45 AM
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Mike,

Judging by the questions you are asking now, you seem to have already become acquainted with your cancer and that's a good thing. Keep on top of the learning curve and you will at least eliminate many unknowns and the associated fears.

I will try to answer your questions but keep in mind that I am not a doctor, just a cancer war vet.

Re chemos: the standard bearer seems to be Cisplatin but it can have a nasty side effect...permanent high frequency hearing loss. Some receive it every 3 weeks during Tx (3 times) while others get it once a week during the rad. Some also receive Erbitux to possibly lessen the loss of saliva and still others receive 5FU which can shrink the tumor. Some receive combinations.

Keep in mind that the chemo isn't thought of as a killer of our cancer but as an aid to make the cancer cells more susceptible to the killing effects of the rad.

When to start chemorad should be left up to your docs, period.

Re odds: Forget them. I was told 50%; then 60%; then 70%; then 80-90%. ALL before I had even decided on who would treat me and how I was going to be treated and I was/is a Stage IV. All that should matter to you is DO I survive.

I have always thought to myself that the mental stress that we all go through is 50% of our battle yet very little attention is thrown that way.

Again stay on top of the learning curve.

P.S. You are not a dead man walking, but if you did smoke before, I wouldn't touch the stuff ever again.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
#23708 07-09-2007 03:06 AM
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Mike,

I misposted and was timed out:

Erbitux is not the drug some receive for saving saliva. That drug is amifostine. Erbitux is also used to shrink the tumors.

Told you I wasn't a doctor.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
#23709 07-09-2007 03:19 PM
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Erbitux is a monoclonal antibody. It is seldom used as a monotherapy since it does not directly kill malignant cells. It blocks a protein messenger that tells the malignant cells to duplicate, buying time for other chemo or rad to do the heavy lifting. When used as a monotherapy it is a time buyer primarily. See http://www.oralcancerfoundation.org/treatment/targeted_therapies.htm


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#23710 07-09-2007 06:18 PM
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Cisplatin side effects, such as hearing loss are on the uncommon side. It is a nasty, tough, SOB of a chemo treatment but used in conjunction with radiation it can improve survival odds by as much as 13%. People developing an early sensitivity to Cisplatin have been switched to Carboplatin, it's less toxic brother. The side effects can be managed however. It is vitally important to stay hydrated, especially if you are getting Cisplatin ct


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#23711 07-10-2007 01:44 AM
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MikeT Offline OP
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Hi All:

Thanks very much for your replies. I met with my Oncologist yesterday, and he wants to do 6 weeks of radiation therapy with 3 rounds of Cisplatin (once every three weeks). He says that it should boost radiation efficacy by 20%....

Bad news: I found out that the margins on the tumor removal were not clean. The freeze slides done in operation were negative, but pathology report came back positive. Doc sz this is microscopic; radiation/chemo has 80% liklihood of knocking this out.

My question: Why don't they go back in and cut some more of the tissue???? Has any one heard of this?

Thanks again,

Mike


Stage III Cancer of Left Tongue Diagnosed 5/22/07; resection/reconstructive surgery 6/13/07 with removal of left, cervical lymph nodes (1 positive; Chemo/Radiation to commence shortly.
#23712 07-10-2007 12:24 PM
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Mike, same situation for me. The boat load of rad plus chemo will kill anything left. I have been clear and feeling great for more than five years, so just get on with the treatment and don't worry. Want to know how effective that chemo is? I started competititve swimming at age 8 and picked up some ribbons and also the athlete's foot fungus, which was with me for the next 40 years -- until the chemo killed it.

Don't mess with percentages. They can be so easily manipulated, and every patient is different. The results also take into consideration the patient who continues to drink and/or smoke during treatment, the patient with other underlying illness. and many other variables. 80% means nothing. You stand a good chance of having the same results I had, and I sincerely hope that you do. Good luck!

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